A Novel International Patient Registry in Myasthenia Gravis Linking Clinical and Patient-reported Outcomes Data: The Vitaccess Real MG (VRMG) Registry
Fatemeh Amini1, Jack Lawrence1, Sally Vincent1, Tsitsi Penduka1, Geraldine Hall1, Alasdair Fellows1, Mark Larkin1, Anna Scowcroft2, Raphaelle Beau Lejdstrom2, Natasa Savic2, Saiju Jacob3, Ali Habib4, Francesco Saccà5, Amanda Hayes6
1Vitaccess, 2UCB, 3University Hospitals Birmingham, 4MDA ALS & Neuromuscular Center, Department of Neurology, University of California, Irvine, 5Federico II University, 6Muscular Dystrophy UK
Objective:

To design a global patient registry (“Vitaccess Real MG”) to optimally quantify the impacts of disease and treatment on patients living with myasthenia gravis (MG) using electronic medical record (EMR) and patient-reported outcome (PRO) data.

Background:

Myasthenia Gravis (MG) is a rare, chronic, autoimmune disease characterized by debilitating and fluctuating muscular weakness. There is no robust source for MG research combining PROs and clinical data, including symptoms, daily activities and quality of life.

Design/Methods:

Patients with a clinically-confirmed diagnosis of MG are recruited in the US and UK, with planned expansion to additional European countries in 2025/6. In all countries, recruitment can occur at clinical sites, with healthcare professionals contributing clinical data from patients’ medical records. In the US only, patients can also be recruited direct-to-patient or via their treating community neurologist; in both cases, clinical data are captured retrospectively via an electronic medical record aggregator. Clinical data – including medical history, treatment history, and adverse events – are captured on a six-monthly basis.

For all patients, clinical data are linked with PRO data – including: Myasthenia Gravis Activities of Daily Living; MG Symptoms PRO Fatigue Scale; NeuroQoL Fatigue Short Form; and Myasthenia Gravis Quality of Life 15-item Revised Scale. Patients contribute PRO data directly via the web-enabled VRMG platform on a monthly or bi-monthly basis, in order to track disease activity between clinic visits. Patients can opt in to receiving weekly text message prompts to capture MG symptom changes.

Results:

Direct-to-patient and community neurologist recruitment in the US were initiated in July 2024, and site recruitment in the US and UK were initiated on September and October 2024, respectively.    

Conclusions:

By integrating digitally-captured clinical data and PROs, this novel registry aims to improve understanding of the symptoms and quality of life impact experienced by MG patients, in order to optimize future disease management.

10.1212/WNL.0000000000208982
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